Send a video message to Prime Minister Trudeau!

SEND A VIDEO MESSAGE AND TELL THE PRIME MINISTER TO STEP UP AND TAKE ACTION!

Tell Prime Minister Justin Trudeau:

what your life was like before ME

and the contrast to your life with ME

stop the harm

what it is like to live with ME in a health care system that mostly stigmatizes, ignores and/or harms people with ME

fund the research

the need to quickly ramp up to the $92 million missing from equitable ME research funding

start the treatment

the need for testing and treatment access, like Ampligen or antivirals like Valcyte.

Notes:

To make them more shareable, please keep your video to less than 60 seconds. Practice what you are going to say. Feel free to send more than one message to the Prime Minister.

Please use the term ME, and not CFS or chronic fatigue syndrome. We are all aware of the deep negative connotation and harm associated with the term ‘chronic fatigue syndrome’. This is our opportunity to consistently ‘brand’ ME…a much easier task than trying to re-brand 3 decades of ‘cfs’. Thanks!

Start your message with something like:

Hello Prime Minister Trudeau, my name is ____________, and I live in _____________, and I have been sick with ME for ____ years. It is important for you to see me, and see ME, because….

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It was more than 14 years ago. I was a spouse, adoptive mother of two young children, and a good friend who paid attention to the needs of others. I was active at work and volunteering.

I not only have had to adapt and live with this terrible disease, but I had to give up everything I was in every aspect of my life.

For many years, while constantly managing my activities and energy, one of my priorities is to volunteer for the Quebec Association of Myalgic Encephalomyelitis. Like many people, I choose to put my energy to furthering education and recognition of this disease, to increase researchers' interest and to bring to the attention of our government the need for fair funding for ME.

I pay a price for doing this and am also less available to my family."

Since May 2017, the last time we asked for donations to cover our costs, the volunteers at Millions Missing Canada have invested many, many, maaaany hours of time and energy making ME relevant to our policy decision makers -- like meeting with CIHR reps and Scientific Director of IMHA, Dr Karim K... ... See more

'Coroner Katherine McKenna today concluded Merryn's cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.

'Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

'Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.